How to save babies from the opioid scourge
| Lebanon, N.H.
You wouldn’t know it by looking at the peaceful infant in pink ruffles, but when this baby girl was born, her cries and shakes from drug withdrawal were so strong she had to be transferred from a smaller hospital to the intensive care nursery at Dartmouth-Hitchcock Medical Center.
As soon as they could, the staff here shifted her to a private room in the pediatrics ward, where her grandmother Diana – her full-time guardian – has been staying for two weeks, soothing her with tight embraces, lavender baths, and dolphin music. “I do my prayer book with her. I sing to her. I read books to her. I do rocking in the chair.... It works big time,” she says.
Drug withdrawal symptoms are not typically so severe. But the number of babies at risk for the short-term condition has risen dramatically at the hospital in recent years because of the prescription-opioid and heroin epidemic. Last year, nearly 1 in 10 babies here had been exposed to opioids before birth, up from 1 in 20 just a few years back.
Around the United States, communities have been struggling to craft policies to deal with what has become one of the most pressing issues facing society – the misuse of painkillers, which in turn leads some people to start taking heroin. Their efforts range from advocating tougher law enforcement to educating doctors to putting limits on the amount of painkillers that can be prescribed to patients. Exacerbating the problem is the discouraging reality that only about 20 percent of those who struggled with illicit drug use in 2014 received treatment, a government survey found.
While the effect of the crisis on adults is daunting enough – heroin-related overdoses have nearly quadrupled in the past decade – it becomes particularly heart-rending when it reaches into the nation’s hospital nurseries. In 2012, experts estimated that about one baby was born every 25 minutes in the US with what is known as neonatal abstinence syndrome (NAS) – symptoms stemming from a mother’s opiate use. That amounted to about 22,000 infants a year, more than five times what it was in 2000.
But rather than be overwhelmed by the problem, the staff at Dartmouth-Hitchcock embraced a new way of thinking about how to treat the babies – enlisting their caregivers as central partners. They’ve had stunning results, and now they’re being looked to as a model.
In early 2013, doctors here were diagnosing nearly half the babies that had been exposed to opioids as having NAS and needing morphine in the intensive care nursery.
But Dartmouth pediatrics professor Alison Holmes had a hunch. More than that, she had research from Europe and Canada showing that for many of the babies, the less they were medicated and the more they stayed skin-to-skin close to their mother or a primary caregiver, the better they would do.
Step 1 in the quality improvement project she launched was talking with the mothers and their families. “I knew a lot about ... medication treatment. I did not know that much about how to work with a family that was struggling through addiction and recovery,” Dr. Holmes says.
It turned out that the way the staff “scored” babies – using a numerical system to measure their NAS symptoms – wasn’t working as well as it could. A rigid schedule, checking for symptoms every two to four hours, meant interrupting parents’ sleep and sometimes scoring a baby who could be tired or crying because of hunger instead of drug dependency.
High scores made it more likely they’d end up in intensive care, where parents couldn’t stay with them and give them the familiar contact they needed.
“The infants do better with care in a calm, dark environment – where they are fed on demand and held a lot – than in an open intensive care unit where there are monitors and beeps and ... a very medical culture ... that tends to want to treat crying babies with medication,” Holmes says.
The staff modified procedures so that babies would be scored just after feedings. They retrained staff and did more education with mothers before they delivered, to help them understand the importance of rooming with their babies and breastfeeding (as long as they hadn’t relapsed into misusing drugs).
Of the babies at Dartmouth-Hitchcock who were exposed in utero to prescription opioids or heroin, the portion treated with morphine dropped from about one-half to one-quarter by 2015. And for the 1 in 4 that did need the medication, they were able to discontinue using it more quickly. Their average length of stay in the hospital dropped from 17 days to 12. And the average dose was cut in half, Holmes and her coauthors report in an article slated to be published by the journal Pediatrics. As an added benefit, costs per treated baby dropped from about $20,000 to $9,000. About 200 neonatal care units around the country are collaborating to improve and standardize the treatment of babies with NAS, says Stephen Patrick, an assistant professor of pediatrics and health policy at Vanderbilt University in Nashville, Tenn., and among this small subset, those that have been most successful have worked to keep mothers and babies together.
Holmes has been in demand from New Hampshire to Capitol Hill to tell the story of how the Dartmouth-Hitchcock team has accomplished this.
One reason the hospital stands out is that it also offers an innovative Perinatal Addiction Treatment Program, which provides pregnant women with individualized services, group counseling, and treatment for mental-health problems such as anxiety, depression, or post-traumatic stress disorder – and stays with them for a year or longer after their baby is born.
It’s a bright spot in an otherwise resource-scarce landscape. A national survey in 2013 found that only about 17 percent of drug-treatment programs serve pregnant women, and many states have no programs designed for them.
Efforts are under way to boost federal funding for such initiatives. A bipartisan bill introduced in 2015 by Rep. Ben Ray Luján (D) of New Mexico and Sen. Kelly Ayotte (R) of New Hampshire would double current outlays, to $40 million, under the Improving Treatment for Pregnant and Postpartum Women Act.
Many people believe more focus is needed on prevention as well. Dr. Patrick says, “if we provide services before pregnancy to women of childbearing age, we can make things better for moms, babies, and the health system.”
• • •
Amy is a young woman who has benefited from the bonds of trust Dartmouth has been building with mothers-to-be. Her addiction problem began when her mother introduced her to prescription drugs when she was a teenager. She had a headache and took her mom’s advice to pop a Vicodin pill.
“Half an hour later I was floating and it was so great.... It all pretty much snowballed from there,” says Amy (who asked to be identified with a pseudonym).
She was seven weeks pregnant when she tried – frantically – to stop her prescription-opioid habit. “I was very, very naive thinking when I got pregnant I would be able to stop myself.... That was way harder than I thought,” says the 28-year-old, who works in child care.
On the street, she bought some buprenorphine – one of the drugs some doctors prescribe to help people get off opioids. “I was scared,” Amy says of the moment she picked up the phone, at 12 weeks pregnant, to inquire at her local hospital about prenatal care. When she told the staff about her addiction, they referred her to Dartmouth-Hitchcock.
Starting with five patients in July 2013, the perinatal program has served 66 women. Many signed up because the message was spreading that they didn’t need to be afraid to seek treatment. Others sought help after the obstetricians added questions about drug use to their surveys for new patients.
“People were beginning to come out of the shadows,” says Catherine Ulrich Milliken, the program’s director.
Amy says she was eager to have the baby, but she felt guilty when she didn’t bond with it at the start of the pregnancy. Another woman in the group told her, “Don’t feel bad now. Some people are just like that,” and assured her the love would kick in. “That was the first time I felt this is where I should be,” Amy says.
Addiction is often isolating for people. “For many of them, this [program] is the first time they are developing healthy, sober relationships with other women, other moms, and that is a very valuable tool in their recovery,” says Sarah Akerman, a psychiatry professor and the program’s medical director.
At one group session, about a dozen women are talking with a counselor, gathered around a conference table at the treatment center, which is nestled into a retail complex in Lebanon, N.H. It could be any kind of new moms group. But the women are not talking about cribs or day care. They’re taking turns saying why they’re in drug treatment and what they’ll commit to this week as a step in their recovery.
“I’m sick of living that life,” one mother says as she promises to keep trying to not use opiates.
“What’s going to help you with that?” the counselor asks gently.
“Being with her,” the mother says, gazing down at the infant sleeping in her arms.
Escaping people in their lives who misuse drugs is a common theme. One woman promises “to stay away from people who don’t care whether I go down or not.” Another says she’ll take certain contacts out of her phone. A third wants to find a new place to live.
Many addicted mothers are reluctant to seek such help – in New Hampshire and elsewhere. In Tennessee, mothers can even be charged with a crime if their babies are born with symptoms of narcotics dependence, though successful participation in a treatment program can be used as a defense.
When the law first passed in 2014, more pregnant women sought treatment, “but that quickly dropped off,” says Hendrée Jones, a University of North Carolina expert on at-risk pregnancies. Because of the lack of additional funding, “some providers even turn pregnant women away,” she says.
The Tennessee law is due to expire this summer unless the legislature acts to renew it.
• • •
At Dartmouth-Hitchcock, Bonny Whalen serves as a bridge between the mothers’ and the babies’ needs. As medical director of the hospital’s newborn nursery, she visits the moms in drug treatment several times before they give birth. She helps them prepare for breastfeeding and teaches them other ways to comfort their newborns, particularly if they are diagnosed with NAS.
Some of the women have had negative hospital experiences in the past or are anxious about whether the medical staff will be judgmental.
Dr. Whalen remembers one mother who sat through the first group meeting with her arms crossed, expressing a lot of anger about health-care providers. Whalen listened and gave some advice about how to talk with doctors and nurses to help them better understand her needs.
“Just that little listening and validating, you could see her guard go down a little bit,” Whalen says. At the next session the woman said her boyfriend wanted more information about the delivery and infant care, so Whalen set up a tour of the pediatrics unit for the women and their families. By the third session, the woman was eagerly planning to breastfeed her baby. “You could see her starting to trust us,” Whalen says.
The hospital staff, meanwhile, had been doing more training in “trauma-informed care” – shifting from responding with common attitudes (how could you expose your baby to drugs?) to understanding how drug dependency develops and intersects with other challenges in a woman’s life.
They could empathize more as they heard the women’s personal stories. Susan Davis’s drug addiction started with a prescription for a painkiller to cope with an old sports injury. “I had no idea it could be so addictive,” Ms. Davis says of her first Oxycodone prescription. “They give it out like it’s candy.”
Davis says she wants people to understand that “this disease doesn’t discriminate. It doesn’t matter if you’re wealthy or poor or educated or not.” She has a master’s degree and hopes to one day work as a drug and alcohol counselor.
While the program is a haven from the judgment the women face from family and society, they are expected to make progress. If urine tests show use of an illicit substance, it’s reported when mandatory – for instance, child welfare has to be notified of any third-trimester use.
The stakes were especially high for Davis this time around. When she found out she was pregnant with her third child, she was in jail for forgery.
“When I was using, I didn’t care about anybody or anything. I wasn’t a mother,” she says.
The day she got out of jail, she relapsed. So she signed up for the Dartmouth program, which she had heard about in jail. She travels five hours round trip for her weekly appointments at the addiction treatment center.
The child-welfare system is not quick to take away custody. But Davis worried she risked losing her husband and her children if she didn’t quit. “I realized it was just me being selfish and that there was a way to stop, and through this program I found that way,” she says.
• • •
While the treatment here for mothers is still too nascent to know how it compares with other programs, the trends so far have been encouraging.
For one thing, the retention rate is high. So far, of the 66 women who started treatment, 24 have left. But most of those women dropped out for reasons such as moving away from the area or deciding to taper off the medication after the birth. Only a few violated their contracts and were referred to higher levels of care.
By comparison, in the general population, one study found about 40 percent of women (not specifically pregnant women) drop out of outpatient drug treatment within the first month.
The women here also attend an average of 13 prenatal appointments, a number comparable to that of nonaddicted women and much higher than is common among substance abusers.
The babies are still at risk for NAS, because the medication that is part of the women’s addiction treatment can result in withdrawal symptoms. But “what’s so wonderful,” Holmes says, is that the mothers here are dealing with their addictions and “are really ready for the birth ... and how they can contribute to the care of their baby.”
Babies who do end up diagnosed with NAS typically stay in the hospital for nearly two weeks, so new mothers need a lot of help.
About 30 volunteer “cuddlers” stand at the ready. Donna Gleeson comes for about two hours a week, and today she’s rocking Diana’s granddaughter, the infant swaddled in pink, who transferred in and recently came off morphine.
Ms. Gleeson says she jumped at the opportunity to be a “cuddler” when she heard about it from her neighbor, a nurse here. “Our youngest grandchild is 7. There are no more babies,” she laughs. “It’s just been a huge blessing in my life. It gives me a sense of being able to give back in some small measure.”
This baby’s mother (who did not have treatment here) is still addicted, so Diana, the grandmother, is taking charge. “It’s a long road ... but she’s a trouper and I’ll do anything I can do to help her,” Diana says.
For the mothers in treatment, being able to room with their babies and contribute to reducing any NAS symptoms can ease their sense of guilt. “It’s really empowering for them to see that they are helping their babies,” Whalen says.
The staff, in turn, see how well the moms do with the babies, she says, and when they “focus on the positive part, that helps change their judgment.”
Davis gave birth to a healthy baby boy in December. While recovering from her C-section, she says she was in pain one day and took one of the Oxycodone pills she’d been given after the birth, even though she knew she shouldn’t have. But she told her counselors about her lapse and quickly got back on track, she says.
She stayed with her son for the four days that the staff likes to observe the babies for signs of NAS. “I did really worry about that,” she says. “It was not his choice. I didn’t want him to withdraw for something I chose to do.”
On that fourth day, the baby got the all-clear. He did not have NAS, and Davis took him home to be with her husband and two other children. “It was a relief and pure joy,” she says.
